December 21, 2017 / 7:32 PM / a year ago

Online resources about kidney transplant too complex for most patients

(Reuters Health) - - Online health education materials about transplant options are far too complex for chronic kidney disease patients to make sense of, U.S. researchers say, and that may prevent this group from deciding on the best treatment.

Researchers looked at the top 20 websites with information about living-donor and deceased-donor kidney transplants, and they found that most sites required at least a college-level reading ability, according to the report in Clinical Kidney Journal.

The National Institutes of Health (NIH) recommends that patient-education material be written for a seventh-grade reading level.

Health literacy is “the degree to which individuals have the capacity to obtain, process and understand health information and services needed to make appropriate health decisions,” according to NIH. “The principle goes beyond just scheduling an appointment or skimming a waiting room pamphlet. It involves critical thinking and the ability to weigh pros and cons when facing a medical crossroads.”

“We have identified a discrepancy in readability of online content and the corresponding health literacy rates among the chronic kidney disease population,” said lead study author Dr. Eric Zhou of Rhode Island Hospital and Warren Alpert Medical School of Brown University in Providence.

The implication for clinicians is a need to better tailor health counseling materials for specific types of patients with varying literacy rates, Zhou told Reuters Health by email.

The researchers searched Google for websites with information for patients about both living- and deceased-donor kidney transplants, and selected the top 10 sites for each category. They transferred the content of the sites to plain-text documents then used software to analyze the difficulty level of each site’s text.

On sites about both types of transplant, the mean reading level score was at college-freshman level or above, the study found. Even the least complex texts were close to a ninth-grade reading level and none were at the recommended seventh-grade level.

“Literacy rates are directly associated with one’s likelihood to receive a transplant,” said Abbey Swanson Kazley of the Medical University of South Carolina College of Health Professions in Charleston, who wasn’t involved in the study.

More-educated patients have an upper hand when navigating the medical system, she told Reuters Health. Conversely, those with lower reading levels tend to have greater difficulty completing the necessary steps for transplantation, which can have a dramatically negative impact on patient care, compliance and long-term outcomes.

The concern is not just for potential transplant recipients.

“If a potential donor’s questions were not answered or if they were confused, they may abandon the process without a realistic understanding of the risks and benefits of donating,” said the current study’s senior author, Dr. Paul Morrissey, also of Rhode Island Hospital and Warren Alpert Medical School.

Of the 10 sites about living-donor transplants the researchers analyzed, all were academic university-based sites, the study notes. Of the 10 sites about deceased-donor transplants, four were academic, four were from third parties and two were from government sources.

If validated health information is too complex to understand, patients may seek out more readable sources such as online forums, blogs or support groups that go unmonitored by professional practitioners, Zhou said. These sources often contain inaccurate or non-scientific information, which may alter a patient’s understanding of a particular disease process.

The next steps, Zhou added, “would be to implement different online patient education materials that are appropriate for each individual’s health literacy level.”

“Specialists should review materials to make sure they are not using too much jargon or writing at an advanced level,” Kazley said. “Use multiple mediums of delivery, such as videos, written text and conversation. This will help with the educational process.”

SOURCE: Clinical Kidney Journal, online November 24, 2017.

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